CAR-T THERAPY FAIL

[pollyg2016]

Hi folks,

We've just had the sad news today that my husband's CAR-T therapy treatment has failed. He has Mantel Cell Lymphomia. To say we are very sad about this is an understatement. We both had high hopes for this treatment and saw it as the last opportunity to be clear of the cancer. He went through 6 weeks of intense treatment (ending up in ICU on two occasions) he also contracting Covid-19 whilst in the hospital. He has been having problems with his spleen recently and it was causing lots of pain. He had a PET scan for his 2nd month assessment, and the doctor confirmed today that somehow the Lymphomia has slipped pass the CAR-T cell and continued to expand. Unfortunately, he cannot get CAR-T therapy again. He has gone through so much in the past years and I think now, we're getting pragmatic about it, although it's difficult, but we just have to carry on. He will start having chemo once again, and there is another drug that they want to try on a clinical trial in a few months time. We were told at his very first diagnosis that the cancer is a manageable one, which is what it now seems to be. So, I think he will have treatment for as long as it works, and then once it stops working, he will be assessed and then have another treatment. My personal view is that as times goes on, hopefully there will be another drug that can do what the CAR-T does but that will work for him, finally. It's been a constant one step forward, two steps back. But we have to and will remain positive. In a world that is now completely upside down, he is alive, and getting the appropriate treatment. He is still better off than a lot of others.

[Charlie120920]

Polly I’m so sorry to hear this news which must have been devastating. As you say if they can continue to manage the Lymphoma there’s sure to be further advances in treatment that could be tried and could work and clear this horrible disease. I’m waiting for biopsy and PET-CT results to see if I will be accepted for CAR-T cell therapy. I’ve had two different types of chemo immunotherapy treatment neither of which has worked. Wishing you and of course your husband all the best and really hope that a cure can be found for him. Try to stay positive if you can.

[pollyg2016 in reply to Charlie120920]

Hi Charlie, Thanks for your kind words. Today is the next day, and after hard conversations last night, including him saying "he doesn't know how long he can keep doing this, and if he became too ill and incapacitated he would stop treatment" we've started a new day with a bit more positivism. He is still in a lot of pain with his spleen and is on strong painkillers 4 times a day. We are now awaiting the Doctors call with the next form of treatment.

[Russ70]

I'm sorry to hear about that. We are hearing all the time that new treatments are being discovered, so hopefully there will be another batch out soon. Keep the faith

[Clementslr]

Such sad news for you but he sounds like a fighter so let’s hope he can keep on going and find a drug soon that will work.The treatment is sometimes so hard. I had a stem cell transplant in September and high dose chemo. It was tough but hopefully has got rid of my lymphoma once and for all. All the best

[maltmom2019]

Thanks for your pragmatic response to what is devoting news. Wishing you both much strength.